14 Aug 2022

MacSharry urges Minister to approve funding for Orkambi

Sligo/Leitrim Deput

MacSharry urges Minister to approve funding for Orkambi

Deputy Marc MacSharry

Fianna Fáil TD for Sligo-Leitrim Marc MacSharry has called on the Health Minister to make the life-saving Cystic Fibrosis drug, Orkambi, available to patients under the Long Term Illness Scheme.

Deputy MacSharry said precedent has been set by former Health Minister, James Reilly, who overruled a decision made by the National Centre for Pharmacoeconomics and made the drug Kalydeco available to suitable patients.

“Cystic Fibrosis is a debilitating and life limiting condition, which affects thousands of people across the country and the Government’s continued procrastination on a decision to provide this game changing drug is nothing short of appalling. There is a commitment in the Programme for Government to “look at opportunities for leveraging purchasing power either through national or European initiatives” but this does not seem to be the case with Orkambi as virtually no progress has been made in reducing the cost of the drug," said Deputy MacSharry.

“There are around 1,200 CF sufferers who would benefit from Orkambi. This is a life or death situation for these people and I am urging Minister Simon Harris to follow in the footsteps of former Minister Reilly and make this drug available to those who need it."

The Fianna Fail Deputy said that the argument over the cost effectiveness of the drug "doesn’t hold any water".

"The cost of an acute bed is between €1,000 and €1,200 a day. Many cystic fibrosis patients can spend as much as nine months a year in hospital, which could cost anywhere between €270,000 and €324,000 per year. The annual cost of Orkambi is €160,000 – roughly half of the cost of the acute care that is currently being provided," he said.

“Not only is this a cost-effective proposal, it would also free up much needed acute beds in the health service. I am appealing to Minister Harris to give this option the serious consideration it warrants and to provide this life changing drug to the people who need it”.

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